Super Bon!

Yesterday was our first trip back to Mass General since my hospitalization. The place is truly massive. My oncologist here calls it The Mothership and that truly makes sense. I had to be wheeled around in a wheelchair because it would have been impossible for me to walk in my current condition.

The first stop was Interventional Pulmonary, to look over my PleurX site, which was looking rather unhappy on Friday. It healed up quite a bit over the weekend, but the big surprise is that they suggested taking it out because I was getting so little drainage. This is fantastic news, since every time I was getting drained, I had to take an opiate, which would fry me for the day. So one more opiate, one more drainage, and the PleurX is out! It is entirely possible that pleural effusions could come back at some other point in my treatment, but it’s best not to leave stuff directly plugged into the interior of your lungs if you’re not using it.

One other thing: one of the interventional pulmonologists walked us through a CT scan of my lungs from when I was hospitalized, and I could finally really see and understand how the cancer cells look different. They’re sort of networked. It may well be that they’re the cause of reduced lung capacity, even though the old papillary ones didn’t cause breathing problems. I have no idea what that means long term for recovery of lung function. One foot in front of the other.

The second stop was the head and neck cancer center, which was my first physical visit there. As you’d expect, the cancer center is always one of the nicest parts of the hospital–just like in Montreal. The experience is different from Montreal, though. My doctor here is a rockstar, and has a team of people working with her, which means I saw a nurse practitioner today. We had stopped my cancer meds on Sunday because Tylenol was no longer working for the fever. Unfortunately for me, before they conclude the chemo is causing the fever, they have to rule out lung infections and so I had another x-ray, looked at by another person who’s never seen my lungs before, and now I’m on yet another course of antibiotics. If there is no evidence of fever off the chemo by Weds, I start it up again, taking Tylenol half an hour before or after each dose. If that doesn’t work, I think the next line of defence to keep me on the chemo drugs but without fevers is steroids.

Carrie and I talked about dividing my days into sections, so rather than thinking of “good days” and “bad days” it’s really segments.

When I got home, I felt like walking a bit before going back upstairs and did a full block and back, which has been a goal for awhile. Achievement unlocked. I went upstairs (taking breaks) and then rested.

An hour later I was in the middle of another cyclical vomiting episode. The first one in awhile. I am still unsure of how to track what triggers them in specific. I tried the under-the-tongue dissolvable ondansetron and it did slow things down but not stop them completely. Half an Ativan finally shut it down. So next time I’ll go in first with Ativan. Then I took my temperature. 102.5. A-ha! I probably couldn’t digest the liquid I was drinking and maybe that’s what started it? So a round of Tylenol and Advil followed. I hate being this far inside my own body this much of the time but it’s not really optional.

A couple hours after that I was happily watching TV with Carrie, and I even got hungry, ate something real (lentil stew), and kept it down. Eventually I fell asleep in front of the TV and went to bed.

So yeah, sections.

Since my last post, I’d say I’m living in a split reality. Every day there’s a little progress or something fun, but also every day some new fucking thing as the new chemo works its way through my body. When starting on lenvima I had a rule that a side effect wasn’t real if it didn’t last a week. I still have the rule but things are a little different because I am starting out on the maximum dose of dabrafebib and trametenib, rather than ramping up from a lower dose, as I did with lenvantinib. I know I’ve complained about over-aggressive American medicine in previous posts but in this case, I’ll take it. When I went on, I was sicker than I’d ever been in my life, by far. And I am still more beaten down, at least in terms of what my lungs can do, than at any other point in my life. And lungs are IMPORTANT for a lot of things.

I’m also still learning how to live my life while attached to supplemental oxygen. I’m hoping that part isn’t permanent, but if it’s temporary it could still last weeks or months, so I might do it as well as possible while I’m on it.

And I’m still learning how to work with/around my limited swallowing.

On the plus side of the leger:

Thanks to a foam wedge and some angling, a less productive cough and codeine cough syrup, I am now mostly sleeping through the night except for whatever interruptions occur (see below).

Yesterday we took an Uber to the suburbs for a scheduled meeting to get tested to see if I could use a pulsed oxygen regulator. Normally, an oxygen tank just delivers a constant flow of oxygen whether you’re breathing it in or not. A pulsed regulator is triggered by your breathing, which makes a portable tank last a LOT longer. The good news is I passed the test and took well to it yesterday, which bodes well for socializing outside the apartment, and eventually going into work when my physical endurance is up and my side effects are a bit more under control. I even cranked it up and walked up stairs with it when we got back to the apartment and it seemed ok.

(The trip was a bit of an adventure — we’d gotten two confirmation calls on Friday for the appointment. Carrie likes to be early, so we’re there at 9:30 for a 10am appointment and it’s a totally deserted office park in the middle of the suburbs. The place is closed and locked. So is everywhere else. No place to wait or sit, Uber driver is long gone. We sat a shivered on some concrete stairs as the wind cut through us. I swear I hallucinated tumbleweed. Finally, at about 10:05 a woman responds to Carrie’s plaintive knocking and is very cranky with her. Turns out the appointment wasn’t conveyed to the shop. She changed her vibe and was very helpful to both of us, we got everything we needed, it was all good.)

We ordered pizza yesterday for lunch and I ate two pieces of pizza, minus edge crusts, which are still a little too hard to break down into swallowable form–you can guess how I figured that out.

The PT exercises are working. It’s considerably easier for me to stand up than it was a week ago. I still get winded doing the most random things and in general move very slowly, but I’ll take any sign of progress right now.

Side effect improvement: no cyclical vomiting since I started the prophylactic ondansetron (Zofran). I have single-puked a couple things (see: attempt to eat edge crust above) but it just came out and was over, which is good enough for me.

Visits from friends.

Popsicles. I have never loved them so much.

Lots of wonderful notes from people. I owe so many people messages back. Sorry!

Napping. Friday I had a visit from a home care nurse, and we expected that I was going to be drained. That process is not exactly painful but is extremely uncomfortable and can turn into painful cramps, so I’d been advised to take prophylactic dilauded in advance. I wound up not being drained (see why below) and so was basically stoned for the day at 11:30am. We thought I might have to go in to the hospital to have the site looked at, which is happening tomorrow. But it meant there was a lot of waiting around. These two factors led to a lot of napping in the recliner, with the sun beaming into the apartment on my face, which was really nice. I am sleeping a lot at night but the extra sleep during the day is clearly not hurting either.

Lymphatic massage (and putting my feet up). When I came home from the hospital my feet were so swollen they couldn’t fit in any of my shoes. Now they can! There’s still excess water down there but we’re getting it out.

New Fucking Things (aka symptomology):

The most shocking was the fever and chills, which is a known and common side effect. Yesterday I took a nap in the recliner while Carrie was out for a walk with a friend. I was fine when I laid down. I woke up about 5 minutes before she got home and was shivering so much I literally couldn’t do anything else, like move or put on something warm. Temp was 101.9. But it was seriously beyond somehow–I don’t think I’ve ever experienced truly debilitating chills before.

I had had chills earlier in the day and took Tylenol and thought “oh haha, chills!” That’ll show me.

With Carrie’s help I got more Tylenol into me, and was summarily bundled up and put into the bed with pretty much every available blanket in the apartment on top of me. Two hours later my fever was breaking and I was pouring sweat. Then, at 2:40am (standard time, not daylight savings), I awoke shivering, but at least this time all the infrastructure was set up for the cycle. I’ve been trying to keep myself on max Tylenol dosage ever since but I still have a bit of a headache and some nausea comes and goes. Definitely on the agenda for the appointment at the cancer centre tomorrow.

The night before, I awoke at 5am, unable to breathe because my nose was completely blocked. I could breathe fine through my mouth, but oxygen comes via nasal cannula only. I’m on several drugs that dry me out, make me thirsty, etc. I tried everything I could think of, culminating with walking into the bathroom, turning on the shower, and just sitting on the toilet and breathing in the steam, which resulted in a spectacular nosebleed out both nostrils. Just an absolute flood. We added a humidifier to the oxygen compressor, and I’ve maxed out the humidification on my CPAP, and last night was better. Fingers crossed that that was a one-time deal. We will discuss decongestant options with the NP on Monday.

I switched my chemo dosage to 2 hours after meals instead of 1 hour before. I’m able to eat a little more, though once I start taking the pills, heartburn and lack of appetite kick in.

I’m not getting much drainage out of my PleurX but there is swelling around the site and it looks gross. I’ll have it looked at on Monday.

At about 1pm today I was discharged from the hospital. With the help of the staff Carrie and I packed up and caught an Uber back to the apartment. I then very slowly, taking breaks, walked up the stairs and into my living room.

There’s going to be a bunch of rehab ahead, but since I had to be carried out of here 12 days ago, I’m very pleased with where I’m at, which is my own couch.

A Provisional Diagnosis

A lot sure changes in a couple days. We saw my local oncologist today and I now have a provisional diagnosis and a treatment plan: high grade metastatic thyroid cancer of the lungs with a BRAF-600 mutation. It is technically not anaplastic thyroid cancer but that may be a diagnostic distinction without a difference. It is definitely not papillary thyroid cancer, which is what I did have. The cells look and behave differently. There is one more advanced genetic test from which we should get results in about 10 days which could change things. But for now that’s what it is.

Since last Friday I have been taking two new (to me) cancer drugs: dabrafenib and tremetinib. They think I have been responding well to those. Thank you lenvantinib for your 5.5 years of service, but you are done.

So the treatment plan is as follows: keep me on those, (doctors) read the report in 10 days and see if that changes anything, CT scan in 4-6 weeks.  For now, no IV chemo or immunotherapy.  That’s the next option if the d&t treatment doesn’t work or if there is another malignant

Dr Seuss Presents the PleurX

Yesterday I had a PleurX installed in my left lung. It’s a clever little drainage system that allows me to drain my pleural effusion outpatient rather than come in. The expectation is that my lungs will make less and less fluid over time with treatment and I will get it taken out in 1-3 months. the surgery itself was painless, but the unfurling of the lung is painful after the initial drainage so I spent a good chunk of the last 24 hours on Dilaudid. I also have a PICC (peripheral insertion central catheter) on my right side

Discharge Date

We are realistically looking at Monday or Tuesday because many things don’t really happen here on the weekend. There are some logistics like PleurX training; seeing if I can sleep flat or need a bed wedge at home (will try flat tonight), and doing my PT exercises which now include stairs to recondition me after this very sedentary (but restful) period in the hospital.

What all this means

I’m going to leave M or T with a lot of uncertainty. Nobody knows if this treatment will work. I expect the first few days at home will be challenging on their own, but then it will get easier and I’ll be able to start enjoying more of my sabbatical again, which is my most immediate goal.

First of all, I voted.  I am in the cancer ward and I voted.  Americans: you now have no excuse.

Second, I’m thumb typing this entry.  Wish me luck.

Third, thanks for all your kind messages.  I cannot keep up with all of them or give a customized account of my condition to everyone, so I hope this will suffice until I can respond personally.

I’ve been here for a full week.  I have had so many tests and things done to me: CT, MRI, X-Ray, swallowing, blood, ECG, EKG, etc.  

We are still waiting for some definitive answers.  

Here are the main updates.  I’ll try and do shorter posts more often — though not if I’m feeling bad.

How I am feeling: 

I am sleeping.  One does not normally check into the hospital for help sleeping but in my case the sleep has been a major boon.  I was waking up coughing all the time at home—like every half hour or more—and it was kind of like torture.  Codeine worked for a few days and then didn’t.  I felt like I was slowly going mad.  Now I don’t.  They wake me up here for pills poking and prodding but I am sleeping through the night.

I can breathe.  Having the fluid removed from my lungs has made a huge difference.  I am being “weaned” off oxygen.  While resting my blood o2 is in the low-mid 90s which is a great sign.  I am hoping I can go off in the next few days but am not rushing it.  However, my body is still producing fluid which would impede my breathing.  More on that in a moment.

When not tethered to machines I can walk around.  With physical therapy I am working on basic endurance stuff since I spent a few days in a bed.  I can circumnavigate the unit and I think today I’ll get to use my cane instead of a walker.  

So that’s immediately physical stuff.

What the hell is wrong with me:

Cancer.  But of an uncertain kind.  We are still waiting for cell stains and other tests to come back.  Including a machine learning based test, naturally.  The current theory is that a dedifferentiated kind of cancer is starting to take over in my lungs.  There is no clear why—the attending oncologist used a wildflowers metaphor.  The good news is that if that’s the case, it could respond well to IV chemo and immunotherapy, which would be more appropriate as a plan of attack than the pills I’m currently taking (though the old cancer is probably in there hanging out too).  My best guess is that the doctors will go ahead and do the IV chemo before being absolutely sure, because it’s better to hit it sooner and that’s how cancer medicine here works.  Apparently there are other options if it doesn’t work but we didn’t get into that.  I will post a quick update if IV chemotherapy starts.

One of the ways cancer in your lungs can kill you is by producing a lot of fluid, which is what happened to me (obviously not the killing part).  “Pleural effusion.”  So it is likely in the next couple days that I will have one or two ports put in my chest, that I can use the drain my lungs at home with this rather elaborate kit that looks like a cheap chemistry set.  It’s a nice invention for independence though because it just means adding 30 minutes of stuff to my shower and then going about my day.

Swallowing. While all the breathing stuff has been going on I’ve also been having swallowing issues.  I had thought my swallowing issues were aggravated by all the coughing I’ve been doing.  (Some of you have seen me cough up food in the middle of a meal—not fun for anyone).  Unfortunately, according to a video test, that is not the case.  Instead, I have muscle atrophy in my pharynx.  Essentially. It’s not strong enough and food gets stuck there.  Most of the hospital’s puréed food is too thick so there have been some unpleasant episodes around eating.  The new plan is having Carrie bring in stuff of the correct texture for lunch and dinner, and they are pushing the Ensures.  Post-hospital, this seems like the thing I can handle by a) cooking for myself and choosing wisely what I do and don’t eat (banana bread, and probably most bread, I will dearly miss you!) and b) eating very slowly, like I’ve been told how skinny people eat (=may be 100% bulkshit, idk, not skinny).  I’ve lost about 30 pounds since I arrived in Cambridge so it certainly works as a diet plan.

There’s neurology stuff to write about but it’s not related to me cancer as far as we know, so I’m going to punt on that.

How I am feeling about all this: honestly, I am still processing.  I am philosophical about it.  I feel safe and well looked after in the hospital, which is a big step up from moments of fear being unable to catch by breath, heightened by sleep deprivation.  I am nervous about what torments await with IV chemo but love the idea of Something Being Done (as a friend put it), and there is a small chance I could even wind up in remission at the end of this which has never been a possibility for me.  No promises though!  I would love to go home but need to be ready to go home, which means being able to care for myself more than when I came in.

Fun hospital fact: whenever they give me cancer meds, it takes two nurses.  All the codes and names are checked.  It’s like launching an ICBM in the movies.